Tim Schmanski's blog

Hello all,

Tori ended up recovering by sleeping all day after her 35 hour staying awake marathon yesterday. She slept all through Monday night for me even when they bag suctioned her several times during the night. She woke up at about 9:00am for an hour then went back to sleeping. During the day she would periodically open her eyes but would fall asleep soon after. It's 10:00pm now and she is still sleeping. Her temperature continues to spike at times but she remained normal for most of the day. We believe she is sleeping alot because her trach culture has shown Cocci related bacteria in her lungs now... They suctioned out of her a full 1500 milliliters of vile and smelly Phlegm over the last 36 hours. She is now being given the Zosyn antibiotic to battle this bacteria.

I met with the therapy doctors Teresa and Ethan this morning and we are all optimistic about Tori's lack of Myoclonic Tremors. We are actually believing the 600 milligrams of daily Keppra is working so we decided to cut her Baclofen dosage from 100 milligrams per day to 80 milligrams per day. Baclofen is used to maintain Tori's Muscle Tone and after checking her arms and legs today her tone is holding up quite well. Her arms are doing considerably better and they can be basically set into any position at this point. Out of the 9 consistently taken medications Tori is now on, Baclofen causes the most drowsiness which is primarily why we want to reduce it.

The physical therapists will begin working on Tori again tomorrow. I found out today that since Tori came back form the PICU (Pediatric Intensive Care Unit) to the CMU (Childrens Medical Unit) she is considered a 'new' patient to the unit even though we came from there of course... So new physical therapy orders had to be created for Tori today. I'm still learning alot about hospital procedures and politics...

Well... The sleeping 'cocktail' Tori had didn't do the trick last night for Maria and nothing else did either... Tori did not sleep at all last night or today and just barely went somewhat asleep about an hour ago. So basically she was up for 35 hours straight... I reviewed my updates and it appears she went over 40 hours without sleep at one time so she didn't beat the record at least.

Tori was more agitated during the night than she was during the day and perhaps it was due to how tired she had become. Very, very tired but still awake... Marilyn, Michelle, Angel, McKenzie and Kourtney all came to visit and she seemed to enjoy the company though. I'm sure she is bored of Mom and Dad by now so any change is welcome ;-) She is still running a fever of 38-40 degrees Celsius at times. Her lungs also have alot of loose Phlegm inside of them and we noticed today that the color of it is totally new to us so they took a few cultures. She is so raspy in her breathing that the doctors have ordered her to be bag cleaned every 4 hours. Again, with bag cleaning the respiratory technicians force air into her lungs to loosen up the phlegm to be suctioned out of her trach. Once they are done Tori breathes very smoothly for a while.

Tori's NJ-Tube became plugged today so they had to take her down to radiology to have another one inserted. She did much better this time and put up little fight because she was exhausted. Her feeds are once again at 85 milliliters per hour.

One item I haven't spoken about much lately is her lack of Myoclonic Tremors. They are simply non-existent for the most part but we don't know if this is due to the Keppra dosages or that she is just not feeling well. We will find out shortly when she finally beats off the Cocci bacteria.

Maria and I are often asked about Guy and Sophie and why we are such great friends. So we wanted to provide just one simple example of why they are part of our family and why we love them as such.

Guy, Sophie and July (Guy's sister) were in San Francisco Thursday evening when I called them and informed them of Tori's dire condition at the time. Though they were not supposed to return to SLC until Sunday, they quickly called for any immediate flights but unfortunately there were none until late Friday afternoon. This information did not deter them at all and they proceeded to DRIVE their rental car 14 hours to SLC to be with Tori and our family as fast as possible. That is exactly why we dearly love them and always will.

Thank you Guy and Sophie for all of your love and support and we are very thankful for everything you have done for our family. I believe almost anyone exploring this site can sense the type of caring, loving and awesome people they truly are!!

Very sincerely,

Tim, Maria, Tori, Whitney and Brendan

The Zanaflex that was administered to Tori late last night did lower her heart rate and blood pressure as it is designed to do but not to any levels to be concerned about. Tori slept pretty comfortably the rest of the night and the PICU nurses were also polite enough to let me sleep in straight through the 7:00am-8:00am shift change when all visitors are supposed to be kicked out of the room. Thank you nurse Torrey!! :-)

Tori awoke in a great mood and was awake, aware and tracking with her eyes. We ended up removing her Subclavian Central Venous Line and another set of IV Lines in her hands. The only one she has now is into a vein in her left foot. All or most of her medications will be given now through the NJ-Tube in her nose.

We then moved Tori back up to her old room 3044 in the CMU where all of her posters, decorations, flowers and other items remained during her quick visit at the PICU. Let's all hope and pray that we will never have to visit the PICU again. She ended up doing quite well throughout the remainder of the day. She does get agitated at times and it's primarily when the poor nurses and doctors are around and trying to do their jobs... Sorry about that for all of you who care for Tori and visit this site. There was a doctor yesterday that wanted to look into Tori's mouth and she refused to open it. So he hid around the corner while Maria got Tori's mouth opened but once he moved in again to check it Tori quickly closed it up!! She did this several times to him and he never got to look into it!! Kinda funny but still frustrating for the doctor... hehe

Tori's temperature was hovering in the normal 37 degrees Celsius range all day until about 7:00pm tonight when her fever flared up again. She has given Tylenol to help her with it and the fevers will be expected to appear in this fashion until her Cocci bacteria is completely removed from her system. She has probably by now received her sleeping 'cocktail' containing Bennedryl and Melatonin so Maria can have a great night's rest as well.

Tomorrow we will get Tori heavily engaged into her physical therapy once again and keep her going in it!! That would be a nice change for everyone I am sure :-)

Thank you all and good night,

-Tim

Good evening,

I'm sitting next to Tori tonight creating this update. I finally hit up the IS&T team here at the PCMC and begged them for wireless network access. The technician I worked with was a former Novell guy so now I am all set!! :-) Very nice!!

Now on to Tori. She is resting quite well and her vital signs are all looking absolutely great again!! A live look at her blood pressure shows a nice 130/78mmHg. Her temperature has been hanging in the 38 degree Celsius range all day as she continues to fight off the Cocci related bacteria. Tori did wake up today and provided us all her bright and beautiful eyes. She very actively scanned and interacted with us once again which was so nice to witness. Tori continues to bite down on her lower lip when she becomes agitated so it is pretty cut up and swollen at the moment... They actually had to stuff a small towel in her mouth last night to help out on the lip biting.

Tori currently has an NJ-Tube, NG-Tube and suction tube going through her nose. All of her medications and feeds are going though the NJ-Tube into her small intestine. She is getting 30 milliliters per hour of continuous feed at this moment. The NG-Tube and suction tube are into her stomach and are simply clearing out the Bile at all times to hopefully prevent her from vomiting again. I forgot to mention yesterday that the GI surgeons attempted to replace the G-Tube into her stomach with a GJ-Tube. They were unsuccessful in getting the tube inserted into her Small Intestine because Tori's Pyloric Sphincter is not operating correctly. The GI doctors believe it might be related to Tori's very low body weight... Again, this is our main focal area now so there will be much more on this topic during the next several days.

Wow!! What a wild and humbling ride it has been over the last two days. I'll give an update now of exactly where Tori stands presently and I will also include the sequence of events starting Thursday morning after it.

At this moment Tori's Vital Signs are all within range of normal which is quite the contrast from last night. She is still running a fever of 38-39 degrees Celsius which is expected as she fights the Cocci related bacteria that infiltrated her system from her PICC Line which has since been removed. She will continue to take the antibiotics to fight this bacteria for 10 more days and she is expected to improve with each passing day. She is not very alert at the moment because she is still very ill and she is sleeping alot to compensate and heal. Maria and Aunt Laurie are also spending the night with her tonight.

Below is a lengthy and detailed summary of the past two, very trying days:

Tori slept very, very well late Wednesday night and early Thursday morning. The nightly Zanaflex combined with the Bennedryl and Melatonin 'cocktail' is definitely a winning combination for sleeping. She was also suctioned only twice that night so I slept just as well as she did.

At 8:15am Thursday morning Tori vomited and she aspirated it as well. At that point her feeds were immediately stopped and her G-Tube was vented to remove all of the Bile from her stomach. The vomit was bilious and but we could detect feed in it as well. Remember that Tori's feeds are bypassing her stomach and going straight into her small intestine through the NJ tube so there should NOT be any feeds in her stomach. This raised our concerns so X-Rays on Tori's stomach and lungs were ordered and the results showed positive for lung aspiration and that her NJ-Tube had slipped from her small intestine and was inside her stomach again... It was still in place on Sunday so it slipped sometime during the week.

I thought a quick, early update today would be good for everyone following yesterdays update. Tori had a very long night and early morning but she is overcoming tremendous odds against her once again. Her vital statistics are still improving at this point and she is continuing to just FIGHT!! I don't know how else to explain it because she was truly in a very dire condition last night but she is still with us today. She is just amazing!!

I will post an update later today that will explain everything we have went through during the last couple of days.

Thanks once again,

-Tim

Hello everyone,

It is extremely difficult for me to give Tori's update tonight and to be perfectly honest I debated heavily whether to provide it or not. Maria and I finally decided that all of you have the right to know of Tori's current condition.

I am so deeply saddened to report that Tori has been moved back into the PICU with a bacteria that has caused a Septic Shock condition and she is once again desperately fighting for her life. She will need all of your prayers and thoughts tonight.

Thank you so much and we love you all,

Tim, Maria, Tori, Whitney and Brendan

Hello again,

I found out today through email and phoen calls that there are many, many people who depend on their morning Tori update just as much as their Starbucks!! ;-) I was a little late on my daily update yesterday because Tori actually slept through the night and didn't wake Maria or I up. Usually I can depend her for a wake up between 1:00am and 5:00am so I can then go post an update but yesterday she broke the trend so I'm actually posting tonight BEFORE I go to bed :-)

Tori did very well again today as she was awake and rarely agitated. We upped her Keppra dosage a bit more after our meeting with all of the doctors today. Tori's Myoclonic tremors are still evident but they are definitely not as strong and again, they do not seem to agitate her nearly as much. Tonight Sande, a technician who was assigned to Tori a week ago, is back watching Tori and she is amazed at her progress. I had the opportunity to demonstrate for her my calming techniques on Tori and she watched as the tremors just disappeared!! In reality, it's pretty much ALL Tori doing this rather than me...

Tori was again placed in a standing position today by the physical therapists. She did well and this time stood for 30 second intervals rather than the 10 second intervals of yesterday. You could easily tell it gave her a workout because she was breathing very heavily when resting.

We added 5 milliliters of water to Tori's 80 milliliters of feed for an 85 milliliter per hour total input. Not much of a residual appeared on her G-Tube venting and she had 3 bowel movements today so her digestive system is responding pretty well. We will cut off the laxative type medications at this point though...

Maria and I met with the following doctors today: Adam and Chad from medical, Teresa and Ethan from rehabilitation, Josh from neurology and our case workers Cathy and Susan. We discussed Tori's current condition and outlined the next set of steps. Tori's digestive system is mostly back on track but we will evaluate her for an GJ-Tube in her stomach so we can rid her of NJ-Tube in her nose. The GJ-Tube will replace the G-Tube and allow us to place feeds into her stomach or small intestine from that single position. We still need to start placing feeds into her stomach at some point. Tori's Keppra dosage has been upped and her Zanaflex will be reduced to only one dose at night to help her sleep. No doses will be given during the day. Melatonin and Bennedryl will also be leveraged to make Tori sleep at night. We are trying to ween her off of Valium doses. I believe Tori's total drug count is now at 10 and I will break those down tomorrow for everyone. We will also complete a Intrathecal Baclofen Pump test on Tori next Monday when we will directly inject Baclofen into Tori's spine and monitor the results for a day. The results of that test will indicate if the Intrathecal Baclofen Pump will be beneficial to Tori or not.

Hello everyone,

Tori decided to try for her 'staying awake' record during late Sunday night and today... Tori ended up not sleeping at all throughout Sunday night which meant I didn't sleep much either. She truly seems to have super hero strength if she does not want to sleep. We tried just about everything we could during the day - 5 doses or more of Valium, additional doses of Zanaflex, Tylenol, Bennedryl, Motrin and even the newly added Keppra. During the night she was more agitated because the Phlegm I mentioned earlier is getting thicker and stickier so it does not come out of her Trach very easily. In fact when she coughs it bypasses the Trach and enters her mouth which intiates her to swallow it... The Respitory Technicians had a heck of a time getting a culture because of this and the culture they eventually got on Saturday still shows negative for any bacteria. So they will continue to monitor this and actually 'Bag' Tori when they need to deep suction her lungs.

So Tori finally went to sleep around 3:00pm today which gave her a total time of 31 hours straight of being awake. She didn't beat the record which is I believe 38 hours straight... She slept until 6:00pm then woke up again until 8:30pm and is now still sleeping as I am typing this update. I do have to state that while Tori is up during the day she isn't necessarily very agitated. She is very sedated so her eyes can barely open but she is definitely still up and can see and hear. It's kind of strange and it seems like she just doesn't want to miss anything or something like that...

In regards to Tori's digestive system, Tori did vomit slightly during Sunday night. We didn't even notice it until the morning when we checked under her and noticed traces. It basically came out of her Trach and ran down her neck. There wasn't a severe vomiting episode like in the past. We quickly stopped the feed and drained her stomach contents from her G-Tube which showed about 300 milliliters of Bile. There wasn't any of her feed in it so it appears the NJ Tube is still working correctly and placing the feeds into her small intestine. So we are kind of stumped as to where the vomit came from... We then restarted the feeds and continued to vent Tori's stomach through the G-Tube. She did well throughout the day as we upped the feed all the way to our goal of 75 milliliters per hour and she remains there at this time. We are really hoping and praying for Tori to handle the feeds because her weight is now approximately 94lbs which is not good at all... She has lost close to 23lbs since her injury. She did have another bowel movement this morning so yet another positive sign her digestive system is recovering.

The physical therapists also ran Tori through her routine and her legs and arms are still doing well with muscle tone and spasticity. The Botox in her arms has worked especially well and we can now move them in almost any direction with much less resistance from Tori as in the past.

Tori's Valproate (Valproic Acid) level was 80.6 today so we started the Keppra. The list of Tori's various medications now stands at 16. 11 of those are consistently given and 5 are as needed. Again, the goal is to trim this list once the Keppra effects are known.

Maria and I have a meeting scheduled for Wednesday at 1:00pm with Tori's medical doctors, therapy doctors and neurologists. We will discuss Tori's current condition and prognosis and try to decide on the details for her next direction.

Well, I believe that is it for today.

Thank you all so much for your support!! As I began typing this update there were 139 total users on the site which is truly incredible and the numbers just continue to grow. I hope these updates are beneficial to everyone and again, I will strictly provide the facts around Tori's condition and progress and I never intend to 'sugar coat' them at all.

Thanks again and good night,

-Tim